PKU infographic and facts:

The Diet and Formula are the oldest and most well researched and tested treatments for PKU.

When PKU was first discovered in the late 1960s , treatment started with the amino acid formula.

Secondly it was the low protein diet as the main treatment for PKU.  Patients with PKU where placed on a restricted diet with limited protein.  The less protein in the diet, the less phenylalanine in the blood.

They actually use to think that PKU patients could come off the diet after age 7 as they use to believe the brain stopped developing. Patients who were taken off diet at such a young age, now suffer from delays, developmental and social disabilities. Thoug they are not mentally handicapped. Being taken off diet as children has impacted their ability to be high functioning , maintain relationships, hold steady employment,  impaired reading and writing skills , learning troubles, or struggle with depression and anxiety.  As well as challenges maintaining diet and compliance to diet and  managing lower phe levels.

It was in my generation when scientists finally had enough evidence to prove Diet should be for life. There is no cure for PKU. You do not outgrow it, and your brain never stops developing.

The Low Protein / Low Phe Diet consists of :

Mediabolic amino acid formula

Medically necessary Low protein food products that are artificially made not to have protein or phenylalanine in them.  These foods range from baking mixes, Pastas, pre made frozen foods made specially by Cambrooke foods and more.

Limited amounts of Fruits, vegetables, fats , spreads, oils and spices. Some hard candies and fruit juices are also low in phe.

Foods high in phe or protein such as Meat, Dairy, Fish / Shellfish, Nuts / Seeds, Legumes,  beans, peas , Soy, Tofu,  eggs, grains, and regular pasta must be avoided.  Also higher protein vegetables like corn and potatoes must be limited.